I want to go home in Daddy's truck

Sometimes the smallest of moments give the greatest amount of hope. Friday night produced one of those moments. Cole, Cale and Erin came to the house while their Mommy and Daddy went out to celebrate Brandi's Mima's birthday.

Of course we went through the normal session on the swings with Cale and Cole and then went in to have supper. Supper was followed by Cole carrying his new Thomas book and "demanding" it be read to him as he holds like his teacher would. Cale was playing with the cutout puzzles and watching "teebee".

Cole showed Marcia how he exercised at school. He got on the floor and said "exercise" then laid no his back and made like he was pedaling a bike.

Cole and Cale could no doubt solve the nation's energy crisis as the expend their's and ours nonstop.

But to the small moment. Brandi and Chris return around 8 and soon after one or the other said it was time to go. Saying something like get ready to go. Well Cole had arrive at 5 or so with his mom in her van and his Dad had arrives at 6 or so in his truck. Chris's truck is parked outside the privacy fence. Cole has not seen the truck.

When someone said, "lets go", Cole spoke up clearly and concisely,"I wanna go home in Daddy's truck. Don't sound like much of a moment much less great until taken in the context of Cole's Fragile X.

For Cole to want to go home in daddy's truck, he had to remember that he came in Mommy's van an hour earlier and Daddy arrived later. He then made and assumption.

That Daddy came in his truck.

Brandi and Chris got the test back on Erin and it was positive for fragile X. Erin has not shown any signs of developmental disabilities, but she is shy and has high anxiety in some situations. Now that we know some of the reason we all can approach situations differently with her.

She is still sweet and my Pill as I call her.

Pride is not a word I often use nor an emotion that I often display. But I am so proud of my children, Brandi and Chris. They have given a huge responsibility and challenge. They are meeting it head on.

Baker, Cole Baker

What is your name? Baker,(pause)Cole Baker is the answer in a Bond, James Bond sort of manner.

I have posted in the past that Cole-man would not say his own name. Well now he does and it is a Bond like manner.

He has seemingly always been able to call everyone by name, even answering what is your Granny's name with Marcia, what is your Nana's name with a broken Barbra. And the name he seems to like to answer with the most, what is your Papaw's name.

He surprised me this past weekend as we were asking about different names from the Thomas characters to Cars to his new love, Toy Story. After a few questions of what is his name running from Woody, Buzz and Rex, Cole ask me, "What is Papaw's name?"
Followed by a "Kirk" and then a big smile and look of accomplishment. He returned to asking and answering "what is Papaw's name?" Everytime with a big smile as he said with voracity and perfect enunciation, "Kirk".

Cole and Erin were here with us for Saturday a week ago when we had a visit from our oldest Grandson, Andrew. Erin and Cole were both glad to see him and their Uncle Ben as were Marcia and I. Erin, Andrew and I made plans for a fishing trip on his next visit.

Back to Cole. He is one perpetual motion machine. He loves to play and he loves to "read" his books. He almost has a book in his hand unless he is swinging in beloved swing on the carport. He has pretty much memorized his three Thomas books and his Toy Story book. He intently listens so he can chime in on the words he loves to say.

Top Hat aka Sir Topham Hat has long been in his vocabulary. Top Hat is all he would say when ever the character appears in the video or on the pages of his book. Well, now he is pronouncing it "Topham Hat" still no Sir but a well enunciated Topham Hat.

Now back to that swing. Cole loves to be pushed as high as the swing will go. Mostly I give him a few good pushes then sit down in the rocker and give him a boosting push as his arcs become shorter and shorter. No longer will that do. As I sat down in the rocker from swinging him, he shouts "get up Pappy, stand up Pappy". All this in one sentence. Well I had to get up and send him sailing again. As I headed for the rocker Cole shouts again, "No, Pappy standup, push me".

You have to really understand how much a leap in communication this is for Cole and me. So, I jump up and push again. This time I sit down even though I am being commanded to "stand and deliver" so to say. I explain that Pappy is hot and tired and I will push him while seated.

Cole allows me to push him one time from the seated position then declares "I want down, Pappy". Which is not new and so I rise to slow the swing and release him from the safety straps. Well, Cole looks me in the eye and says," I want to swing, push me".

Cole has become devious, he has baited his poor Pappy. He has learned how to get me out of the chair and receive the push that will send him arcing high into the air back and forth in his swing... I guess I am an easy mark, you think.

I wish you could all have a visit from Cole-Man. I hope that some will visit him at his golf tournment Friday, September 30th at 1:00 pm at the Francis Lake Golf Club
in Lake Park. You can contact Cole's dad Chris about the Tournament here chris@redoxchem.com.

Thanks for indulging a doating grandfather and thanks for your support.

Cole is now in school. He has completed three days. I picked him and Erin up from school Friday afternoon. When I pulled up to the pickup area one of the teachers called for Erin Baker, but up popped Cole first dragging Erin up by the arm, she had a death grip on him, practically leaping over other kids. "Jim, Jim, Pappy he hollered as he climbed in the open door.

He went directly to his booster seat and Erin buckled him and off we went to visit Granny on the way home.

"Granny, Granny he called as we approach Marcia's office, it just up the road on the way home. "See Granny" Cole called. He knew Granny would have a snack. We stopped and had a short visit, heading on home.

I just knew he would want to get in the swing when we got there. We pulled in and I got him out of the seat. He started toward the swings to my dread. He turned and said "its hot Pappy". Then he went up the back steps, slung open the screen door, opened the back door and said "come on Pappy, want Coke".

Guess what? He got him some Coke and I sighed with releif that there would be no swinging session in the 102 degrees heat. No sooner than I had put ice in the cup he had taken his stool out of the cabinet. He has a little fold up stool he uses when he washes his hands in the kitchen sink. He went directly to the pantry, climbed on the stool and pulled down the Chex Mix bag. "I want chips" and so we had Chex mix.

Cole and Erin then went into our bedroom and turned the tv on to Nick. Erin sitting in the chair and Cole perch up high on the end of the bed with his cup of Coke and cup of Chex. I-Carly didn't hold his attention long before he was asking for a Thomas DVD.

I went to the DVD stack and pulled out one. He took it, looked at it and said "Thomas workshop, want Treasures". These are the things that amaze and puzzle me about Fragile X. Cole can't read a lick (I think) but he knows which DVD is which and he has several. He looks at them and calls them by title. Friends help out, Milkshake, Treasures, Workshop and others I can't remember.

He also has several Thomas books with illustrations and one or two lines of text on each page. Although he can't repeat the complete line on each page. He knows what line is on each page. And he has three or four books that can correlate the words with the illustrations. But then on the other hand he still can't or won't say his own name.

I look at these things and then remember that at age 3 he hardly said more than a dozen or so words. Now he is five and knows all the charaters of Thomas, Spongebob, Toy Story by name. He follows the stories, laughs, sings and talks to the DVD. He has come such a long way.

He still comes to my chair and says " lap, Pappy, lap". Use to be to climb up and take a nap. Now he climbs up with his book and "reads" to me and then tells me to read to him.

The bottom line. He is learning. Learning differently from "normal" kids but he is learning.

In a previous post I mentioned that Chris and his friend Charlie Cosey are organizing an golf tournament to benefit FRAXA. Things are starting to come together.
Several sponsors have been established and several teams have already signed up.

Chris and Brandi along with Charlie and Patty are hoping to make this an annual event and establish a south Georgia Chapter of FRAXA. They are working hard at it and I want to thank those who have offered and given support.

Here is a link to the Team up for a Cure sight.

http://www.firstgiving.com/fundraiser/chrisbaker/teamupforacurecharitygolfouting?utm_medium=share&utm_campaign=share&utm_source=at-facebook&utm_content=eua#.TigsS4JYpM1.facebook

Here is a link to FRAXA.

fraxa.org

Thanks for visiting and as we say in the south, Y'all come back, ya' hear.

It is me again. I have been thinking about all of you reading my ramblings about my two youngest grandsons. Last month over 340 people veiwed this page. I hope they all read the last entry and some of the earlier ones also. I hope that all the visitors take away something that will make them smile, but mostly something to remind them of those children who need special attention. Not just my grandchildren, but all children with physical and/or mental deficiencies.

For the parents and family of Fragile X children I hope they something for the stories I try to tell be it solice in, inspiration from, amusement or anticipation just as I do in theirs when I read their post in Fantastically Fragile X.

We had a visit from Cole, Cake and big sister, Erin. They came for an overnight on Thursday and statyed until Brandi picked them Friday evening.

Thursday evening we played in the sand, in the swings, on the trikes and in the cars just like every other visit. This time though Cole began to get the idea about the pedals on the trike. He actually pedaled for a few feet before deciding it was easier to use the "Fred Flintstone" method. Poor little Cale is so short he can't reach the pedals yet. But Cole is really beginning to grow. His little short "Baker legs" are stretching out. Both Cale and Cole have big feet and hands like their Dad and his Great GrandDad, C.B. Grimes. Anyone that knew Mister CB, knew he was a gentle giant, still standing over 6'4" in his late 70s.

Cole's vocabulary and the use of it continues to grow by leaps. His new phrase this week was "I wanna do it myself". He is becoming more independent. Taking off and putting on his shoes, dressing him self and attempting to pour his on "coke" and "ketchup" and "ranch".

I put those words in quotes because he uses them. He will tell you immediately when you serve him any dish, "I want Ranch and Ketchp". And of course, "coke".

I am going to purchase a "youtube" ready video camera. I must so you can see Cole balance on the rim of the plastic blow up pool, bounce up and off it like a diving board doing a cannonball. Splashing his siblings and his Granny. He seen to never get tired of climbing out and doing it over and over.

Cale on the other hand does not like to be splashed. He stands in own little kiddie pool and puts on a show of indignation when the cold water hits him. He is such a little actor. He can feign displeasure with such vigor all the while impishly smiling awaiting the attention he knows is coming.

Soon after we went in side Cale pulled the pillows from the sofa and dragged me out of my chair and on to the floor for a round of wrestling and bouncing off Pappy. He is so full of energy and runs endlessly to somewhere he never seems to get.

Not to leave Erin out. She helped Marcia cook supper. Spaghetti, fried green beans and garlic bread. Erin stirred the sauce and buttered the bread, actually hot dog rolls cut in half. She is such a smart little girl and independent minded as well.

Back to Cole. Marcia reads bedtime stories to Cole and Cale as they lie in their beds. She uses a small flash light with the overhead light off. Now Cole sits in her recliner 25 or 30 minutes at a time holding the flashlight on his favorite books, turning the pages and guoting the words as he knows them from the pages. His favorite is Thomas's fishing adventure. He quotes the lines "Thomas's boiler hurts", "fish in his boiler". He has certain pages he likes more than others. While his is not reading the lines, he has memorized what page they are on and recognizes them from the illustrations, I believe. He continues to learn although in different ways than what would be considered to be normal. Last week he drug a chair to the screen door and began to unbolt the the crossbolt latch. This is certainly something he figured out on his own. He was successful at it as well.

While he still does not readily recognize colors, he has memorized the colors of the train engines in the Thomas the tank engine books and videos. You ask him what color is Thomas and he will say blue, but then you can as what color is Gordon and he will almost always say green. When you say no, he will say Gordon is blue. Same with Percy and green. But he alway says Toby is brown. The other side of this is Cole will ask Marcia, "what color Gordon". Marcia will say "what color is Gordon?". Cole will answer "Gordon is blue".

He recognizes Woody, Buzz and the horse (which I can't remember) and call their names as he points out the characters on the t-shirts or bowls or cups.

Here again for all of those who are still with me, Cole is making progress communicating and in becoming more self sufficient. So is Cale who in many ways is ahead of Cole on the learning curve. I have great hope for them both.

On Friday,September 30th, Chris is organizing a golfing event to support research into cures and treatments for Fragile X and related disorders such as accompanying Autism. I hope to post more complete details about this in future posts.

If you would like to contact me about the Golf event or anything else about this blog, please send me and e-mail to helpfragilexhelpcole@yahoo.com

Thanks

Jim

My grandsons, Cole and Cale, spent the night with us Sunday. They stayed with Marcia today while Brandi, their mother, took Erin, their sister, to the doctor.
I use this blog to talk mostly about Cole and his progress with Fragile X.
Little brother Cale has a diagnosis of Pervasive Developmental Disorder Not Otherwise Specified(PDD-NOS). This seems to mean he does not have Fragile X but has something we just don't quite no what yet.

Both boys are happy little guys for the most part. They run, play, ride trikes, love their swings. Cole loves Thomas the Tank engine and operating the DVD player.
Cale watches the DVDs intermittently, likes to dance to music and will throw little "fits" occasionally in an attempt to get attention and his way. He usually puts on a cry but is smiling all the time.

They spent time in the blow up pool while here today. Cale likes to get in the water but is a little timid about actually playing in the pool. He did do a little more splashing than in past visits.

Cole on the other hand is a fish. He bounces off the sides of the pool into the water and breast strokes under water to the other end. It is amazing. He holds his breath instinctively. When he pops his head up he blows out his breath and takes a deep one in before submerging again. He does something on every visit that amazes us in spite of his Fragile X.

Today's visit reminded me that they only come to visit every week or so and leave Marcia and I wore out, but they are cared for daily by their mother, Brandi. I am reminded that every day she deals with their needs. The normal everyday needs of 3, 5 and 7 year old kids plus the special needs and attention that must be given to children that are physically mature for their age but whose ability to process everyday situations are limited by the ability to communicate. It is a difficult thing to express, the exceptional needs of these kids that go beyond the needs of most children.

Most of all it is the patience needed to deal with the behaviors that may not be considered acceptable by some but uncontrollable by the child and the parent. Patience that must be practiced day in and day out not just on the weekend.

Brandi does this and it is evident. These kids with all their problems, behavioral abnormalities and communication skills love their Mommy very much. They run to her when she returns to pick them up. They hug, kiss and squeeze her with such affection it makes you smile and cry all in one moment.

Without doubt, I know that Brandi must sometimes feel unbearable weight from the challenges of raising her kids. But she wears it well and I am so thankful that she is the mother of these children. She gives up so much to be there for them and to give them the nurturing they need.

I have the greatest respect for all Mamas, but mothers raising children with special needs, be they physical, developmental or intellectual disabilities, are special people and Brandi is my special person.

Thanks to you Brandi, you will always have our support and admiration.

It has been a few weeks since my last entry to this ongoing story of Cole and his progress with Fragile X. Cole's communication skills continue to grow. He is using more and more sentences. I won't try to list them all but some are worth mentioning.

His most used phrase this weekend was, "Jim, come here". He goes between calling me Pappy and using Jim. But I guess the one that somewhat amazed me was when my Mom called. Cole had woke from his nap and crawled in my lap with his pillow and nodded off again. The phone rang and it woke him a little. It was Mama. Cole heard me talking and wanted the phone. I told Mama Cole wanted to speak to her. I handed it to him, not telling him who it was. I could hear Mama say, Hi, Cole. Then Cole replied," Hey, Gramma. What are you doing." That was about all as he slip back into his coma sleep.But he recognized Mama's voice who he had not seen in a month and over the phone no less, then used her name and ask a question. This is a big leap.

If you have read past posts you know that he loves Thomas the Tank Engine and all the accompanying characters. Well Cole is slowly mastering the colors of each engine. I know that it is not that he recognizes the colors but he is memorizing what color goes with what engine.

He spent 30 minutes with Marcia where she would ask him what color each engine was and he would answer. Sometimes correctly, sometimes not. Then he brought his book and sat in my lap. He began to ask me, "what color Thomas?" I would answer appropriately, blue. He went through the entire cast. Percy, Gordon, Emily, Henry, James, Edward, Toby and on. I would answer the color and he would repeat it. Then he began again.
What color is Thomas? I answer I don't know. He replied Thomas is Blue and we went through the entire cast again doing this. He got all but one or two right. He was proud of himself. He gave me that little look what I can do pose.

He is putting his clothes on without help. Gets them inside out and backwards but gets them on along with his shoes. His shoes which he sheds almost as soon as he puts them on.

We filled the blowup pool and in they went. He dives in and holds his breath(and I hold mine till he comes up)and tries to paddle around and then climbs out and dives in again. He loves the water. He also loves to splash anyone who get close enough.

I am changing speeds here for a while. Below you will find a link to "team up for a cure". This link will tell you about a golf outing Cole's dad, Chris and Chris's friend, Charlie Cosey, are organizing. Charlie's son is 2 and has been diagnosed with Fragile X. These two Dads are trying to make a difference in the lives of their sons.
The golf tournament will benefit FRAXA.

FRAXA is an organization that sponsors research for cures and treatments of Fragile X. You will not see TV adds or Internet adds seeking donations for FRAXA. Most all of FRAXA's funding comes from the efforts of family and friends of Fragile X children. Flea Markets, yard sales, bake sales, basketball tournaments and golf outings are organized by parents, Aunts, Uncles and Grandparents. As far as I know there has never been an event in South Georgia to benefit FRAXA directly. So we are hoping for a lot of support from our communities.

This is the link to the golf outing. You can copy and paste into your browser.

http://www.firstgiving.com/fundraiser/chrisbaker/teamupforacurecharitygolfouting?fb_ref=mainpage&fb_source=profile_oneline

Please take a look at the link and if you can get a group of golfers or wannabe golfers together to play please do. If you can only volunteer to help please do that.
You can make a donation directly from the site. No amount is to small.

FRAXA is on the verge of breakthroughs in treatments and possible cures. Please vist their website, fraxa.org.

Fragile X affects 1 in every 4000 boys born in the US and is a leading cause of autism. Believe me when I say it can affect you and your family. Thanks for any consideration you can give to this golf event and to FRAXA.

For the parents who had to wait longer to hear a first word, who spent more time in doctors offices with their child than on play dates, who endure countless bad days and the stares from other people...For the parents whose child's first friend was their doctor...For the parents who face special needs everyday...WE SALUTE YOU ALL. Re post if you are proud to be or know a family with a child with special needs."

This was posted on facebook by my brother in honor of his nephews Cole and Cale.
My brother, Kenny, has his on personal history with matters of the brain and its limitations and frustrations. I watch him struggle after his motorcycle crash. He struggled to regain his mobility and even more so his command of the vast knowledge
his mind possesses. This is not my usual sarcastic humor the he and I banter back and forth. He has made a miraculous recovery.

When I first saw him in the emergency room ICU, I could not see how he would live much less recover to be just as obnoxious, innocuous and hardheaded as he ever was.
In short the brother that I love and care for.

Thank you little brother for being you.

It is an off week for Cole and Cale. They are with their Mommy and hopefully their Daddy. It is a quiet Saturday morning here on the end of Plantation Drive. Almost to quiet. But it gives me time to remember last weekend and the moments that make being a grandparent great.

One of those things is that you can share Cole and Cale's unbridled joy and love with their other Grandparents. Barbara and Kirk came to pick the children up Saturday afternoon from our house. About 30 or 40 minutes before they arrived Cole and Cale were in the swings. Marcia came out to tell them Nana and Papaw were coming. Their faces lit up and the clapped with such spontaneity, joy and enthusiasm as the scream out, Nana, Papaw over and over.

Then Cole, expecting them to drive up at any minute, said "open the gate, Pappy, open gate. I told him we would have to wait for a few minutes. He and Cale kept their eyes glued to the back yard gate for the next 10 or 15 minutes as they continued to swing. Every time a car would pass on the street they both would rise up in the swing seat only to sink back as it passed without stopping. Then with much effort we diverted their attention and they began to play in their cars and on the trikes.

Barbara called as they were getting closer, but we did not say anything to Cale and Cole. When they pulled their car into the drive and the gate opened it was shouts of Nana, Papaw. Both Cole and Cale jumping, clapping and then running to their Nana and Papaw.

Now I have to admit I had a tinge of jealousy and a slight feeling of rejection. It was short lived because the joy and enthusiasm of those two little boys is infectious. That along with knowing why they are so glad to see Barbara and Kirk.

It is more than comforting knowing the circle of love and caring that exists for these little boys. A circle that we now know extends to their big boisterous, gregarious and amazing Uncle Kenny.

All that said, Cole and Cale's language skills are getting better every time we see them. Cole told Marcia he wanted "sausage and eggs" for breakfast last Saturday, Cale added "me too". That was a new one for him.

Cale has mastered all the cut out puzzles we have, so we will have to find some new ones. Cole has worn the pages out of his "Thomas" books. So the same is true for those. Cole has become less interested in the "DVDs" of Thomas. He still puts one in the player and turns every thing on but does not tune every thing else out. He plays with toys more and with Cale. However he stops most times when the the musical sessions come on. He claps and dances to the music with a pretty good sense of rythym.

I will leave it there, but below you will find links to Fragile X Syndrome information. If you would like to know the causes, symptoms, treatments, research and statistics please visit these sights. A cure for Fragile X would be the greatest thing for these children which may be achievable, but a future where people are educated about their condition, understanding and supportive is acheivable. Please help.

http://www.fragilex.org/html/resources2.htm
http://www.ghr.nlm.nih.gov/condition/fragile-x-syndrome
http://www.conquerfragilex.org/about_resources.php